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LQTS Seminar 2019

LQTS Patients and Families Seminar
Celebrating 40 Years of the International LQTS Registry

The International LQTS Registry was established in 1979 and on September 21, 2019 we held a seminar for patients and families to celebrate 40th anniversary of our Registry. For the last 40 years, LQTS patients and their families contributed with very important data to the registry allowing us to advance the field of LQTS research on diagnosis, genetics, and clinical management of this inherited arrhythmia disorder.  The seminar was well attended with over 50 LQTS patients or their family members learning from several lectures by Rochester faculty and participating in vigorous discussions. Questions about diagnosis, genetics, clinical testing, risk assessment, optimal management, therapy and prevention were empowering and motivating our team to further pursue new research goals to alleviate challenges of this disease. The agenda of the seminar with specific talks and respective slides is provided below. 

  • Welcome and Introductions   Wojciech Zareba MD, PhD     Video
  • Clinical Cardiovascular Research Center (CCRC)   Ilan Goldenberg, MD     Video     Slides
  • 40 years of the LQTS Registry – Dr. Arthur Moss (1931-2018) and his Legacy   Wojciech Zareba MD, PhD     Video     Slides
  • Update on the Long QT syndrome – scientific output of the Registry   Ilan Goldenberg, MD     Video     Slides
  • LQTS Registry – How does it work?   Kris Cutter, MS     Video     Slides
  • Children with LQTS   Jeffrey Vinocur, MD     Video     Slides
  • Sport Activities in LQTS   Spencer Rosero, MD     Video     Slides
  • LQTS Patients’ Perspective     Video
  • Therapies in LQTS   Spencer Rosero MD     Video     Slides
  • Drugs prolonging QT   Wojciech Zareba MD, PhD     Video     Slides
  • Pregnancy in LQTS   Ilan Goldenberg, MD     Video     Slides
  • Why genetic testing is important   Ilan Goldenberg, MD     Video     Slides
  • Implanted Cardioverter Defibrillators (ICDs) and Automatic External Defibrillators (AEDs) – Patient 101   David Huang, MD     Video     Slides
  • Therapies of the Future   Wojciech Zareba MD, PhD     Video     Slides

 

University of Rochester Faculty for the Seminar:

Wojciech Zareba MD, PhD
Professor of Medicine/Cardiology
Director of the International LQTS Registry

Ilan Goldenberg, MD
Professor of Medicine/Cardiology
Director of Clinical Cardiovascular Research Center

Kris Cutter, MS
Manager of the International LQTS Registry

Jeffrey Vinocur, MD
Assistant Professor of Pediatrics/Cardiology
Pediatric Electrophysiology

Spencer Rosero, MD
Professor of Medicine/Cardiology
Director of Clinical Cardiology Research
Electrophysiologist

David Huang, MD
Professor of Medicine/Cardiology
Director of Electrophysiology Section
Electrophysiologist

Bonnie MacKecknie
Information Analyst of the International LQTS Registry 

Rebecca Horn
Information Analyst of the International LQTS Registry